CF CARRIER TEST....

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sweetPEA86

New member
<b>Hello I'm new here and have a question. My boyfriend is a CF carrier and has a 3 year old son with CF. I would like to get tested to see if I am also a carrier. What is the name of the test, is it just "CF test"? And if I am a CF carrier what can we do to have a heatlhy child? </b>
 
S

sweetPEA86

New member
<b>Hello I'm new here and have a question. My boyfriend is a CF carrier and has a 3 year old son with CF. I would like to get tested to see if I am also a carrier. What is the name of the test, is it just "CF test"? And if I am a CF carrier what can we do to have a heatlhy child? </b>
 
S

sweetPEA86

New member
<b>Hello I'm new here and have a question. My boyfriend is a CF carrier and has a 3 year old son with CF. I would like to get tested to see if I am also a carrier. What is the name of the test, is it just "CF test"? And if I am a CF carrier what can we do to have a heatlhy child? </b>
 
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dyza

New member
You want to have the full 'Ambry test', this tests for the most mutations, 1200 I think. I think they can screen sperm to see if it is 'clean'. Not sure of the procedure name, others will no doubt let you know.
As for cost, not got a clue about insurance in the USA paying for this.
 
D

dyza

New member
You want to have the full 'Ambry test', this tests for the most mutations, 1200 I think. I think they can screen sperm to see if it is 'clean'. Not sure of the procedure name, others will no doubt let you know.
As for cost, not got a clue about insurance in the USA paying for this.
 
D

dyza

New member
You want to have the full 'Ambry test', this tests for the most mutations, 1200 I think. I think they can screen sperm to see if it is 'clean'. Not sure of the procedure name, others will no doubt let you know.
<br />As for cost, not got a clue about insurance in the USA paying for this.
 
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rwatterson

New member
Be careful, the carrier test is very expensive, even when covered by insurance. The common one that most doctors perform tests for the 32 most common mutations and it's just called the CF Carrier Screen. Some companies also offer the option to test of 100 mutations, obviously the cost increases. I had this done a few years back and it ended up costing $500 out of pocket, takes about 2-4 weeks to get the results back.
 
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rwatterson

New member
Be careful, the carrier test is very expensive, even when covered by insurance. The common one that most doctors perform tests for the 32 most common mutations and it's just called the CF Carrier Screen. Some companies also offer the option to test of 100 mutations, obviously the cost increases. I had this done a few years back and it ended up costing $500 out of pocket, takes about 2-4 weeks to get the results back.
 
R

rwatterson

New member
Be careful, the carrier test is very expensive, even when covered by insurance. The common one that most doctors perform tests for the 32 most common mutations and it's just called the CF Carrier Screen. Some companies also offer the option to test of 100 mutations, obviously the cost increases. I had this done a few years back and it ended up costing $500 out of pocket, takes about 2-4 weeks to get the results back.
 
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julie

New member
Personally, I HIGHLY recommend the Ambry Genetics test www.ambrygen.com When my ex-husband and I were considering having children (he has CF) they initially did the Genzyme test that does the 32 most common mutations. But I just wasn't comfortable with the risk and fought the ins. company to get it covered.

I outlined the risk (%)of us having a child with CF, and reminded them of the ANNUAL cost of my ex-husbands healthcare attributed to his CF. I put it to them something like this, "The ambry genetics test is a one time diagnostic test you will have to pay approx. $xxxx for, whereas if it is not covered by the ins. company, we can not afford to pay for it ourselves and you, the ins. company run the risk of having to cover the EXPENSIVE healthcare needs of another person with CF". Their pre-authorization department called back within 72 hours with an approval.

If you meet resistance with your ins. company, contact me and I can help you draft a letter.

If you do end up being a carrier, IVF with PGD is the "safest" way to go to not end up with another CF child
 
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julie

New member
Personally, I HIGHLY recommend the Ambry Genetics test www.ambrygen.com When my ex-husband and I were considering having children (he has CF) they initially did the Genzyme test that does the 32 most common mutations. But I just wasn't comfortable with the risk and fought the ins. company to get it covered.

I outlined the risk (%)of us having a child with CF, and reminded them of the ANNUAL cost of my ex-husbands healthcare attributed to his CF. I put it to them something like this, "The ambry genetics test is a one time diagnostic test you will have to pay approx. $xxxx for, whereas if it is not covered by the ins. company, we can not afford to pay for it ourselves and you, the ins. company run the risk of having to cover the EXPENSIVE healthcare needs of another person with CF". Their pre-authorization department called back within 72 hours with an approval.

If you meet resistance with your ins. company, contact me and I can help you draft a letter.

If you do end up being a carrier, IVF with PGD is the "safest" way to go to not end up with another CF child
 
J

julie

New member
Personally, I HIGHLY recommend the Ambry Genetics test www.ambrygen.com When my ex-husband and I were considering having children (he has CF) they initially did the Genzyme test that does the 32 most common mutations. But I just wasn't comfortable with the risk and fought the ins. company to get it covered.
<br />
<br />I outlined the risk (%)of us having a child with CF, and reminded them of the ANNUAL cost of my ex-husbands healthcare attributed to his CF. I put it to them something like this, "The ambry genetics test is a one time diagnostic test you will have to pay approx. $xxxx for, whereas if it is not covered by the ins. company, we can not afford to pay for it ourselves and you, the ins. company run the risk of having to cover the EXPENSIVE healthcare needs of another person with CF". Their pre-authorization department called back within 72 hours with an approval.
<br />
<br />If you meet resistance with your ins. company, contact me and I can help you draft a letter.
<br />
<br />If you do end up being a carrier, IVF with PGD is the "safest" way to go to not end up with another CF child
 
E

ElizabethlovesChris

New member
I too recommend the Ambry Genetics test for the most peace of mind since it covers so many mutations. If you ARE found to be a carrier, keep in mind that you and your boyfriend would have the following chances:
1 in 4 of having a child WITH CF
2 in 4 of having a child who is a carrier
1 in 4 of having a child who is neither a carrier nor has CF

If found to be a carrier and you still wanted to continue the process of having a biological child, your options for a 'safer' chance would be going through an in vitro fertilization clinic and doing PGD selection. The cost of this process is extremely variable between clinics, but I know at ours it would be approx. $10,000 total (meds, IVF, ICSI, PGD selection...). It is extremely unlikely that insurance would cover much, if any, of these costs.

Best wishes to your boyfriend's son.
Liz
 
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ElizabethlovesChris

New member
I too recommend the Ambry Genetics test for the most peace of mind since it covers so many mutations. If you ARE found to be a carrier, keep in mind that you and your boyfriend would have the following chances:
1 in 4 of having a child WITH CF
2 in 4 of having a child who is a carrier
1 in 4 of having a child who is neither a carrier nor has CF

If found to be a carrier and you still wanted to continue the process of having a biological child, your options for a 'safer' chance would be going through an in vitro fertilization clinic and doing PGD selection. The cost of this process is extremely variable between clinics, but I know at ours it would be approx. $10,000 total (meds, IVF, ICSI, PGD selection...). It is extremely unlikely that insurance would cover much, if any, of these costs.

Best wishes to your boyfriend's son.
Liz
 
E

ElizabethlovesChris

New member
I too recommend the Ambry Genetics test for the most peace of mind since it covers so many mutations. If you ARE found to be a carrier, keep in mind that you and your boyfriend would have the following chances:
<br />1 in 4 of having a child WITH CF
<br />2 in 4 of having a child who is a carrier
<br />1 in 4 of having a child who is neither a carrier nor has CF
<br />
<br />If found to be a carrier and you still wanted to continue the process of having a biological child, your options for a 'safer' chance would be going through an in vitro fertilization clinic and doing PGD selection. The cost of this process is extremely variable between clinics, but I know at ours it would be approx. $10,000 total (meds, IVF, ICSI, PGD selection...). It is extremely unlikely that insurance would cover much, if any, of these costs.
<br />
<br />Best wishes to your boyfriend's son.
<br />Liz
 
W

Willy

New member
You can always do a DNA test with 23andMe. They test on 31 CFTR mutations. I found I am a carrier of Delta F508 with this test. Its only $99 and you get alot of other health and ancestry data.
 
W

Willy

New member
You can always do a DNA testwith 23andMe. They test on 31 CFTR mutations. I found I am a carrier of Delta F508 with this test. Its only $99 and you get alot of other health and ancestry data.
 
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Willy

New member
<BR>You can always do a DNA testwith 23andMe. They test on 31 CFTR mutations. I found I am a carrier of Delta F508 with this test. Its only $99 and you get alot of other health and ancestry data.
 
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